Party and Puddles

Oliver turns two on May 1st!! I can't believe my little guy is two, or maybe I can't believe we have made it through two years!! Guess it depends on the day. We had a small party for Oliver on Saturday. John and I were both anticipating the worst as Oliver does not really like a lot of stuff going on. He did end up having seizures at the end of the party and has been having them since. It just reinforces our feelings that from now on his parties will be just the four (soon five) of us. Not that we don't love celebrating with others, but it is Oliver's Birthday and a gift we do not need to give him is a seizure. He was in the ER last week for a quick visit, he has been biting his hands so bad that his hand was swollen twice the size it should have been. We got restraints so he would not be able to bite, yes, he loved them!! We also went to see another of his many docs who is following up with other docs from around the country about Oliver. Apparently some of his genetic tests have rarely or never been seen, so many are interested. They have banked some of his blood to do more tests in the future. This way we don't have to keep going in for random blood draws. There was much more from this doctor, but it would be a short novel if I wrote it all. She does feel we need to see a sleep specialist for Oliver. His sleeping situation continues to worsen. Five out of seven nights he will only sleep for about three hours and not nap the following day. Not sure how he does it really.
After Oliver's party there were some perfect mud puddles. Mine and Adina's favorite thing to do after the rain is jump in puddles of course! Nothing better than getting all muddy and messy. It is also fun to explore after the rain. Adina has been coming with to Oliver's therapy appointments at Gillette Hospital. I like having her there because she sees so many other kids in wheelchairs and their siblings. Today she went up to a little girl and said, "Hey, you have a really neat wheelchair." When we walked away she asked if she could get one like it! She also got to see one of the therapy dogs, Adina LOVES these dogs. Adina's newest career's in the, "When I grow up" game is a duck, teacher, piano player, rhino, piano (yes, the actual instrument), and a french fry maker at McDonald's. I told her whatever makes her little heart happy. That is what life is all about, happiness!!

Oliver finally crashed hard after his seizures. When he has seizures he sleeps like this everywhere. This is right after I changed is outfit, diaper, and fed him. He slept through it all!


YES!! Look at all this mud! We had to pour the water out of her boots after this.


Jump...

Jump..

Love the hair!





Snuggle time with daddy!


Birthday Cakes. Adina helped add the sprinkles. Clearly we are master decorators!


Opening the squeaky toys from Adina.


Adina loves to help her brother.

Spring

It has been a fantastic spring in Minnesota! We have already had many days in the 70's, which is just right. It has been so long since we have posted but I figure that only can mean good news. Oli is doing really well. Still has seizures but he always will. It is just kind of normal to have them every now and then. The big ones are scary, but we have the oxygen and other equipment and meds in the house so we are prepared. Adina knows how to silence the alarms and continues to want to help push his meds (with mommy helping) and is now pouring his food. It is not an everyday thing but when she asks I let her. I think it is very sweet the ways she takes care of Mr. Oliver and he loves her so much.
The nurse has been FANTASTIC!!! She comes twice a week and Adina is now asking when it is her turn to stay with the nurse! It has giving me a chance to do some days with just Adina and take her to do special things. Also, I have a chance to do things that I before took for granted. Like, doing laundry during the day, cleaning while Oliver is still awake, running to the grocery store during the day... things like that.
Adina is three going on 13! We are not always prepared for the attitude that comes with three. The time out corner has been getting good use lately!! It has been great to get outside where she can play with all of her friends and burn off all of that energy! She has decided that when she grows up she will either be a doctor or a turtle. I told her that whatever makes her happy, a mechanic, a teacher, an explorer, or a turtle I guess!
Oliver will start getting Botox injections in his legs at the end of June. It is to help reduce his spastic movements and help him stretch those little legs better. I am happy we are trying this before starting another medication.
The count down is on for baby number three. Adina asks the baby every morning if it is ready to come out yet! We have about 4-5 more weeks to go!!
Happy Spring!

We went roller skating with our church. Oliver took a spin around in his wheels!


Adina skating and falling. She refused any help. She wanted to do it, "all by myself!"



Oliver's new big boy carseat. Took a while for insurance to finally approve this huge thing! He loves it!


Maybe she really can be a turtle. I believe this is where the inspiration of becoming a turtle came from. The children's museum!


Adina's favorite part is the dinosaurs! Daddy apparently was excited too. John is not wearing make-up, Adina painted his face!


My favorite picture of beautiful Oliver.


Adina's first real haircut. She help my hand tight but after they gave her a sucker she wanted another haircut!


Easter! Family pictures are never easy.


Our two bunnies.



Strike a pose!



Painting Easter Eggs.


Very serious business.

Busy Busy

Since our last post we have been very busy. After being denied for nursing care about six or seven times we were about to give up! Finally we were approved for 35 hours per week! We were hoping for 48 but will take anything. We started the busy process of meeting with our case manager and meeting nurses. We found the perfect nurse and she started last week! Because I am also an RN, I was able to apply for something called a Hardship Waiver. It allows parents who are nurses to care for their family member if they are unable to have a job outside of the house due to the medical needs. I technically work 17.5 hours as an RN with Oliver and get paid for it.
We also have some new equipment in the house. New bath chair, which Oliver so far hates, but will have to learn to love. Also, we now have oxygen tanks, a suction machine, and an Oximeter in the house. I didn't think we would really ever need them, but due to the fact that Oliver has trouble with excess saliva and getting it out of his mouth we need suction for emergency. Since he turned blue in his last seizures we need the oxygen and the Oximeter. While training in the nurse I showed her the equipment and said, "I really don't think you will ever need this equipment." Ten minutes later Oliver started having seizures, Oxygen sat level went from 98% to low 80's, and needed oxygen for about 20 minutes. He also needed his emergency seizure meds that day, so overall I told the nurse it was a great training day! I do have to admit that it was incredibly hard for me to hand Oliver over, even though I trust the RN. John and I do not feel comfortable leaving Oliver with anybody, really, so this was tough—but important! He is so sensitive to everything and has seizures so easily, but the nurse was fantastic! Adina and I were able to go outside and play for two hours in the snow, I was able to do house work, and laundry during the day!!! Usually we have to wait until night to do these things when we are both home. Adina already knows how to work the Oximeter and silence the alarms, she is a little nurse as well. Daddy has been gone almost all day because he’s doing his clinical work at the Good Samaritan (not the VA) and having the nurse come will be a real help.
Oliver had his sedated hearing test and has PERFECT hearing! When the audiologist said this I said, "Excuse me, perfect!? So he is just a normal man with selective hearing!!!" The nurses and sedation doctor were not able to get an IV placed because his veins are so bad. They had to use meds through his G-tube to put him out. Of course all of the excitement from this caused seizures, but he has perfect hearing!! Next time he is sedated for anything we have to tell the nurse ahead of time so they can make some special arrangements.
Adina has been ice skating a few times, but has now also decided that when she grows up, she wants to be a professional bull rider (she saw it on ESPN)! Don't worry, we will not be going out anytime soon to buy her a bull! She is also sure that she has a baby in her belly just like mommy. Now that we have a nurse we will be able to have more special Adina days. The first day that we left Oliver with the nurse, Adina was very worried that the nurse was going to leave Oliver. She is very protective!

Ice and Wheels

Adina tried out the ice and quickly realized the carpet was a lot easier than the skates on ice!! Most of her time was on her butt! Either way we had lots of fun! She held onto a chair and pushed it along slowly. She fell and said, Mommy, what do you say?" I had no clue!! She said, "Mooommm, when you fall you just get up and try again and keep movin forward!! That's what you said in the car!" Glad some things stick I guess. We will try again soon, we are supposed to have some 34 degree days! HEAT WAVE!! Might need to bust out the shorts and sandals.
We went in Tuesday for Oliver's 8 hour appointment with the Assistive Technology guys and they are absolutely amazing and filled with talent! They start with the base of the chair, look at Oliver, and start cutting out the cushions, back rest, head rest, foot rest, and straps. It is made perfectly for Oliver's little body. The chair is supposed to last about 5 years depending on his growth. Basically, every time he grows out of a clothing size, we go into Gillette again and they will change the size of the chair ("Grow the chair" in assistive tech terms). Luckily we are close to Gillette. We picked up the chair today so we could bring Adina. She was really excited too! Oliver did great on his first ride and seemed to love being able to hold his head up with all of the support offered by the chair. We were so proud on his first test drive that it brought tears to my eyes! Way to go Oliver!!


Ice skating or butt skating? Both were fun!


The chair before the first sit. There were many changes made from larger or smaller cushions, wedges, and on and on. Like I said, these guys are great!


The first test! Oliver didn't scream, I was holding my breath the whole time I think. He was such a little trooper all day.


First drive! We were so excited! Even the tray was cut out and assembled while we were there. The wood and cushion will all be covered.


Adina helps the staff with the straps, a proud big sister.


Figuring out the straps and we are outta here!


Wheelchair home and all finished. I never knew it was such a process but appreciate everything Gillette did/does for us!

Baby

We had the ultrasound yesterday with the high risk OB docs. So far everything looks great! She asked what we should look at first and I said, "Corpus Callosum!!" That is the part of the brain that Oliver happens to be missing. We looked and there it was, I was so excited I asked for a picture of it! The two staff in the room were laughing, apparently I am the first who has asked for this picture. We got a lot of images of the brain, we could not see the whole head, so we can't rule out that all of the Corpus Callosum is there. We will have another ultrasound in 8 weeks to measure head growth and check on the brain. We are cautiously optimistic! Chances are we will do an MRI of baby after birth to rule everything out. We could do an MRI while baby is still inside of me(crazy!), but there is no guarantee that baby would stay still, we have become pros at patiently waiting so we will just do that.
Oliver had his hearing tested today at Children's hospital. He responded to very loud sounds but not to the softer sound. It could be that he is not developmentally at a stage to turn to all sounds yet or he could have some partial deafness. The audiologist was rolling with laughter at Oliver. He would fuss and as soon as she would make a silly sound he would get the little Oli giggles. They were playing off each other and it was a blast. Small little things that I most likely would have taken for granted with Adina. Oliver is always teaching me something! There are other tests we could have done but with Oliver's sensory issues of people touching his head we could not do them. We will do a test called a Brainstem Auditory Evoked Response test. He will be sedated and they will monitor if the sound reaches his brainstem with the help of electrodes. It will be good to know this info. We know that he hears, just not sure to what level.
Last bit of news, again Oliver was denied for nursing/respite care. Again, like the last zillion, we will appeal until we get a good reason!
Hope everybody is staying warm!! Gotta love Minnesota winter, or I guess pretend to.

Now introducing baby Klawiter Number three! Better pictures to come! (In about 20 weeks=)

Merry Christmas!

We had a fantastic Christmas even with our big storm! Christmas Eve day we had lunch with Scott, Kara, and Kali Rose, went to church, and came home and spent the night and Christmas day just the four of us. It was the perfect Christmas of peace and quiet, minus the noise of two kids in the house! Here are some pics!!

I'm trying out my new hockey skates! First we got double blades, but talked to some hockey coaches who said if they learn on double blades, they will have to learn again how to balance on single blades. Adina got some Christmas money from her Great Aunt Marsha Klawiter and Uncle Tom Klawiter from California. That is what she used the money for and here she is practicing on the carpet pushing her shopping cart! Thanks Tom and Marsha!! That was really special!


Little Miss Kali Rose found her present early! With a face this serious we were not about to take it away!


The kids in their Christmas outfits.


Adina with the muff and hat she received from her Great Grandparents in northern MN. Adina first thought the muff was a duster!! Might be a great way to have her help me with the house work!!


Family picture time.


Yes, Adina and her baby are matching.


Adina explaining to her baby that Baby Jesus goes here, Mary and Joseph there, the shepherds who watch the sheep go there, and some other guys (wise men) live over there. She later saw a woman wearing a long fur winter coat and yelled, "Mommy, it's Mary!!" The woman kind of laughed, I'm not sure, is that a compliment to have "Mary" style clothes?


In our Christmas jammies from mom and dad.


Leaving cookies and milk for Santa. Yes, we believe in Santa in OUR house. Adina understands that Christmas is about baby Jesus. Sometimes we like to lighten up and have some fun! So, Santa lives in our house, until Adina figures it out in school someday.


The finished plate of cookies. Wow Santa(s) must have been hungry! Adina was a bit frustrated that Santa only took one bite of the last cookie and left it. She thought it was a bit wasteful! Guess she caught Santa there.


Adina reading Oliver his new black and white book. She really loves reading to Oliver.


Oliver smiling at the silly sounds mommy can make!

I'm all smiles! This Santa stuff is great!!


Adina helping Oliver open his gift. We don't do it for him, we put the paper in his hand and he will rip it. Oliver takes part in everything that we do, we never just do it for him!


Adina next to her kitchen that Santa brought for her.